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Tuesday, December 22, 2009

Our story

I am a mom with 4 very beautiful children. Jeremiah is our first born. He is 7 1/2 years old now, which is so hard to believe. I so remember being pregnant with him and all the dreams I had in my mind of what he would be like and how much fun we would have. I remember wondering what he would be like when he grew up. I was so excited to meet my little man. He was born on a beautiful august day. He was very laid back baby. Rarely did he ever cry. He just liked to look around and take everything in. He advanced very fast in every way. By 4 1/2 months he was sitting up. 6 months crawling. He took his first steps at starbucks in frisco, co at 11 months. He explored everything and loved to make huge messes. He was never a cuddler but always up an on the go trying to figure out how everything in life worked. I knew he would be an engineer. At age 1 he could already work the vcr. When he was 13 months he was joined by his beautiful sister Rebekah Joy. He didn't know what to think but in his laid back way accepted her and went on with life. Somewhere between 19 months and age 2 his speech started getting worse. I didnt really notice at first, it took our pediatrician pointing it out. I did notice that he would learn a word and then it would disapeer. I thought he was saving it up for later. HE started having other bizarre things. His favorie toys were the little bath duckies. They went everywhere with us. He would line them up or put them in a horseshoe and tehy would takl to each other. He called them duckie. He started having weird crying spells for no reason, sometimes he would pound on his own head. I did not know what to do. He also had long periods of time where he would stare off and not hear anything I would say, just drooling. I did not know any better at that time but he was having seizures.

Our ped dr sent us to speech Therapy. We did it for a full year and he actually went backwards. The speech T told us we needed OT and a consult with a neurologist. That whole year he progressivly got worse. More into his own world, all words gone and he was just babbling. No one could understand him. He had several run ins with kids at church where he would bite. i was so horrified. I seriously thought he had autism. My husband told me I was crazy and so I cancelled the appt with the nuero. I later made it again and we saw him near the end of Jeremiahs third year. He said he wanted to rule out Landau Kleffner syndrome. And so the rollercoaster of our lives started and we have yet to get off.

We did an overnight eeg and an MRi. The eeg had almost constant discharges coming from his temporal lobe. Dr wang started him on medicine called Trileptol. It was a miracle. Within 4 days Jeremiah started talking, words we hadnt heard. He stopped drooling and he started interacting with us. It was very shortlived though and we had to keep increasing the medicine. He was 4 at this point. He was having the crying spells and something clicked in me from what I had read about complex partial seizures, that they could just be crying. I asked the dr and he said yes. Then the end of oct that year he had his tonsels out. He was fine until 6pm. We were staying the night at childrens hospital. He started withdrawing really bad. At 11:30 he woke up crying, it was a seizure. I pulled him on me and he started convulsing in a grand mal seizure right on top of me. It lasted well over 5 minutes. I was so very scared. I will never forget that night. He wouldnt eat or drink and we ended up being in the hospital 4 days. He had another huge cluster of the crying seizure the night before we left. That one lasted half an hour.

So we came home and things just did not go well. Two weeks later he had a cluster of the crying seizure that turned him completly blue. I called 911. He was admitted and we had another 48 hour eeg. They captured his first sz on eeg. It was a crying sz that lasted 5 minutes. I did know what I was talking about and relief poured into because I wasnt crazy. They changed his medicine and sent us home.

Then on Dec 2 he had a drop seizure outside in the snow and busted open his head. off to the er again and another admit. Dr wang told me that he had consulted with drs from minnesota and that he really felt Jeremiah had LKS (landau kleffner syndrome). Unfortunatly he had already sent us up to childrens for consult. The dr there totally disagreed and told me that he only had ESES. Later in June she denied ever even saying that. So we started on a horrible yes he has it no he doesnt. I had to talk with both of them when things got bad. She had us do an 48 hour eeg right before xmas which showed the eeg much improved due to the daily diazapam and the steriods that Jeremiah was on. Then another 3 day video eeg in january. No seizures were seen at that time.

Febrauary was okay but then he started going downhill again. beginning of march we were admitted because he was toxic on the dilantin and it was affecting his liver. We were there for 7 days. They captured a seizure on the eeg. But then he was not connected and had a horrible crying seizure with vomiting that started at 5:30 am. It was witnessed. We started IVIG to see if it would help him. We continued that once a month for the next 2 1/2years. It improved his speech but never helped his seizures. The dr in denver wanted more proof of the seizures and so in april he spent three weekend hooked up to veeg. only one time did they see anything. We also were giving him huge doses of iv steriods which cleared up his eeg at the same time.

By June I did not want to go back to chidrens. I was tired of all the eegs and always having to prove it. Dr wang wanted us to try just one more dr, which ended up being a nightmare. He told me that I just needed to accept the fact that Jeremiah was just a developmentally challanged kid and that he had autism not seizures. He took him off all his meds cold turkey. Jeremiah spun out of control. He lost all speech 100% even sounds, started pooping in his pants, hiding under the furniture and was terrified. It was horrible, another thing I will never forget. I refuses to go back to childrens and dr wang saw the huge regression in Jeremiah and he tried a different medicine.

He sent us to minnesota where they read all 3 volumes of Jeremiahs records and they said yes he definatly had LKS. They had worked with a lot of kids with lks. It was such a relief. Then in april the next year we caught a whole bunch of seizures even another crying seizure. that was a relief too.

I wish it could have stayed like that. He did really good for quiet a while until we went back to childrens because there were some new drs there. It has been a nightmare once again and I am still living it to this day.

In oct last year through november he had 6-8 status seizures that made him regress and hurt his psychologically. He has never been the same kids since then. Hes more withdrawn and plays by himself. He lives day to day moment to moment. There is so much speech he doesnt understand. non verbal stuff he really understands though. Hes good visually, just not verbally. He doest sleep, He stopped eating and started vomiting all the time. He started seeing a Gi Dr and 2 months ago we had a G tube put in. It has been great. Hes going downhill again, more seizures.

2 weeks ago they could not wake him up at school. He was completly unresponsive even to light stimuli and pain. another trip 911. lots of seizures that day. They just wanted to send him home. Childrens totally blew us off. I still cannot believe it. They are trying to say he does not ahve seizures and that its behavioral and that we should admit him inpatient psych hospital. I cannot and will not do that. I am so tired of this battle. They are slowly killing my son. He has brain damage and I hope it gets better, things are not looking so good right now.

Its christmas and alls I want to do is sleep. I cant stand this anymore. I feel like I am slowley going insane. I just want someone to help Jeremiah and stop being so freaking skeptical because in way is he normal. We have been through too much as a family. When is it going to end? I do not know. My heart is grieved and broken and not much fight left. So that is our story. I hope you can follow our blog and pray for us. You can subscribe to this by email. God bless you!!!Wren